When the #Autistic medical model has gone the way of the dinosaurs…

dialog between mother and autistic daughter explaining the old medical model of autism

Fantastic post from Luke Beardon.

HELLO MUMMY – A (FICTITIOUS) CONVERSATION FROM THE FUTURE

Girl: Hello Mummy.

Mother: Hello Darling.

Girl: Mummy, I want to ask you some questions.

Mother: Ok – fire away!

[Pause]
[Pause]

Girl: Fire away?

Mother: Sorry Darling, silly Mummy. I meant please do ask your questions.

Read the full (most excellent) post here.


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Let’s have some fun! #Autism and #Menopause :)

women walking along a lake in front of a sand dune balancing pots on their heads
Women walking along a lake in front of a sand dune balancing pots on their heads

Okay, I’m pretty sure I know what you’re thinking: Autism and Menopause! Where’s the fun in that?!

But bear with me… If you’re a geeky-nerdy type like me, learning all about the inner workings of one of the most misunderstood situations on the planet and figuring out how to work effectively with it to make your life that much better is an appealing prospect.

The thing is, you’re not alone.

Every seven seconds, one of America’s 76 million baby boomers turns 50.

Every day, about 5,000 American women enter menopause.

Until 2020, approximately 2 million women will reach menopause each year. Half of all post-menopausal women will be in Asia.

That’s a lot of us — and since I’m a woman, and I’ve gone through menopause myself (10 years “ahead of schedule”, thank heavens!) — I’ve got a few things to say about this.

Especially since it really affected — and was affected by — my autistic temperament.

It really, truly did. And if I’d know certain things ahead of time, I might have handled things very differently. And my experience might not have been so awful.

The thing that always amazes me about the social conversations we do / don’t have about menopause, is that it’s incredibly common and perfectly natural. And yet, it’s treated like some dread condition that needs to be either ignored completely or eradicated with some combination of meds. Hm. Sounds a bit like autism, to me, actually. So, we autistic women get a “two-for-one deal” on our situation. We get double the excitement, but nowhere near twice the support.

We’re lucky if we get any support at all.

I know I didn’t. At least, not much. My partner went through menopause before me, so I had an up-close-and-personal chance to see how it affects others. Panic attacks. Wild mood swings. Intense anxiety. Explosions! Not much to look forward to, right? But I also have to consider that her situation was unique — she was going through major changes around her parents passing away, family dramas, work problems, and so forth. I didn’t have those, when I was going through the Change. I had my own set of issues — Autism being front-and-center.

So, for me, the experience was different. But equally intense.

Oh, if I’d known then what I know now… I can honestly and truly say that I would have handled things very differently.

What’s done is done, and I can’t change my own situation. But I can certainly speak up about my experience, in hopes of other Autistic women benefiting from my experience. Like Autism, every woman’s experience of menopause is different. That goes without saying. But the qualities of our experiences (outside the specific details) can be very similar, and that’s where I want to focus.

Because heaven knows we need support. It’s challenging enough dealing with the world when you’re Autistic or menopausal. But when you’re both… woo hoo!

Oddly (or perhaps predictably) the mainstream hasn’t devoted a whole lot of resources to exploring this intersection of issues. Older women — especially Autistic women — don’t seem to be high on anybody’s list of priorities. Much more interesting to study Autistic children, teenage boys, or grown men. There’s more money in that, quite frankly. But where the mainstream fails, we can step up and help ourselves. There’s this thing called the internet, and it’s chock full of all kinds of goodies that we can mix-n-match and augment ourselves, to serve our own needs.

‘Cause who knows our needs better than we? Not a soul.

candle burning in the darkness

So, here goes… I’ll be posting more in the coming days and weeks. I’ll also be publishing additional tools and information over at Auptima Press, especially in conjunction with menopause support resources we’re developing over there.

I can either curse the darkness surrounding women + Autism + menopause… or I can light a candle. I’d much rather do something about it.

 


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Slowwww start to the year

snow monkey sitting in waterUsually, I’m “up to speed” by the 2nd week in January. In the past, I’ve been energized by New Year’s resolutions and the feeling that I have a new lease on life. But not this year. It’s different, now, and I’m not all that invigorated by brand new plans for 2018 that are supposed to fix everything that was wrong with 2017.

Basically, my plans are the same as 2017 – just a continuation with some completion of projects and ongoing progress on the agenda. Whether or not it will “fix” anything, is anybody’s guess, but at least some stuff will get done, and I can get them off my list.

But even though my plans are pretty clear and my path is well-defined, I’m really having to push myself to get going. I can do it. I do do it. I’m a grown-up, and I know that’s what it takes to make progress at times. But this year, I feel like one of those snow monkeys who just wants to sit around in a hot springs while the snow falls all around.

If only I could.

The thing is, I really do have a lot I need to accomplish, this year. Projects I’ve been trying to get done, are finally going to get done, and that’s something to look forward to. But there’s a lot to do, with many little details to get worked out. So — much as I’d like to — I can’t just take myself out of “the flow” and camp out in a pool of warm mineral water.

It’s a goal for future years, but not this year.

Because now that January is here, it seems like everything around me has taken off at top speed. The last 10 days feel like the longest month, and I’ve been scrambling to keep up. Work has been extremely busy, and things at home have been picking up speed. There are health problems with friends. Changes to insurance coverage, that I have to track down and keep on top of (so I don’t have to pay hundreds of dollars for a medication that should cost 5x less). There’s lots of personal drama. Tears. Anger. Mortality. Asking “Why?” And more.

Oy. I could seriously use a break from all the carryover drama plus from last year the brand new drama for 2018. I really could.

Anyway, my life is mine to do with as I please, and with each passing year, I’m more interested in doing something substantive with it. I’ve always been interested in doing that — motivated… driven, even. It’s just that now I actually have a much better idea about how to help it all happen. It’s one of those weird autistic things, where I’m clueless for decades, then all of a sudden — SHAZAM!I get it, and I can suddenly move forward in leaps and bounds.

I’m “funny” that way.

But that gives me hope in a roundabout way. Because if I can flounder and struggle for oh, so many years… and then suddenly — woo hoo!  the path opens up for me in some ways — that means that it can open up for me in others, at any given point in time. And being clueless and stumbling around right now, doesn’t mean I’ll be stumbling around forever in a clueless fog.

Which is, for me (not speaking for anyone else), why suicide is never a viable choice. Because I never know just when things will suddenly open up for me, and stuff that used to be so awful and unbearable aren’t even “blips” on my proverbial radar. Things can turn around for me, just like that, so that’s the state of mind/body/spirit/logistics that I have to hold out for. It gives me something to look forward to, that’s for sure.

So, yeah. My life is there for me to do as I please. It’s not always pleasant, and it’s often pretty painful, to be honest. But I persevere. I hang in there. And ultimately, (many) things turn around. That’s what I’m hanging onto right now, as I lumber through the first weeks of the year like a hibernating bear waddling through the narrow aisles of an antiques store. Maybe some of the stuff I bump into is valuable, maybe it isn’t. Maybe some of the stuff I knock off the shelves is priceless, maybe it isn’t. A lot of that’s in the eye of the beholder, so I can’t get too worked up over things I mess up or break.

I do that. It’s a skill.

But enough about me. I have to go get some work done. It’ll all get done, one way or another, and a lot of it won’t be very enjoyable. But eventually the situation will change, and I’ll move on to something else. One thing at a time, one step at a time, just taking it as it comes, and doing my best under the circumstances… which is pretty danged good, considering how bad / blah / disconnected I’ve been feeling, lately.

It’s all an evolving process. That’s for sure.


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And now I get to go outside

I’ve been stuck inside for the last couple days. Work has been really busy, and I haven’t had the time to just get outside in the snow and enjoy myself. But today is Saturday, and that means the day is my own.

For some reason, I really love winter. No, I know the reason. I love the cold, I love the snow, I love the feeling of getting out in the bitter cold and moving around and getting warm. I also love how movement feels when it’s cold outside. The extremes between the frigid temperatures and my warm interior is very pleasing.

So, enough talking. It’s time to get outside.


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An interesting start to the new year

road with yellow stripes and trees with snow along the sidesUsually, when the new year comes around, I feel an immediate change in my mood. The last year is behind me, and the potential of the new year is ahead. This year, though, as soon as the date changed over to 2018, I had this abrupt sense of reality. It felt like all of the intentions and all of the resolutions of yesteryear were to no avail, and all the positive thinking in the world was not going to get me where I need to go.

It’s been a bit of a downer, in a way, but on the other hand, I think this is probably one of the most promising changeovers I’ve ever experienced. Because while lacking a buoyant sense of optimism feel strange and out of place, the feeling of stark realism give me more hope for my actual future.

I have a lot to do this year. I have a lot of important decisions to make, and I have a lot of momentous steps ahead of me. My writing has shifted to a more intentional direction, with the emphasis on hard work and personal responsibility, and worrying less about what others are doing, than what I’m up to. And my overall worldview has shifted from one that was punctuated with spurts of wishful thinking and visualization interspersing long periods of frittering away my precious time… to dealing with reality as it is, and taking steps to substantively alter it in the direction I desire.

When I think of all the time I spent in the past, just thinking about how I wanted things to be, instead of actually doing something concrete about it, I cringe. Because for all of its ability to make me feel differently, visualization doesn’t help at all if I don’t combine it with actual work. And it’s the work that I’m focused on for this year.

So, I have no over-arching resolutions for this year, no list of things I’d like to do, dreams, visions, big picture blueprints from my future success. What I have now – and this is much more hopeful – is a long list of things I know I need to do, in the order that I need to do them, and a structure to my life that will allow me to actually get them done.

So while this new year maybe a little little more muted than years gone by, it’s probably one of the most hopeful ones I’ve had. A life well-lived takes a lot of work. And I’m worker, so that is definitely in my favor. Rather than hoping, wishing, praying, and visualizing for a changed life, I’m just getting down to the business of doing what needs to be done, and slogging through the boring, challenging, frustrating, demoralizing stuff that inevitably comes with any kind of substantial change.

It’s a new year, and I have a new outlook. It’s the best one I can possibly imagine for myself.


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Just a few more days, till I can get back to my routine

pocket watch on map with sandOh, Lord, the inside of my head sounds ungrateful, right about now. A still, small voice has gradually been getting louder and louder… bitching and complaining about the lack of routine in my days, this past week and a half. And that voice is eager to get back to the familiar routine of the everyday.

I can’t remember the last time I had nearly two weeks off for the end-of-year holidays. I don’t think I ever have. So, in some respects, it’s been blissful. No structure to strangulate my creativity, no outside demands (other than Christmas shopping and the odd errand) to cramp my style. I’ve been able to get up when I wanted, go to sleep when I wanted, pretty much nap whenever I please, and so forth.

Yeah, in many respects, it’s been delightful.

To just let time drift, without having any deadlines, without having any requirements, without coming down to the wire on something… it’s been glorious. My everyday life is structured pretty much around deadlines, due-dates, timelines, and so fort. It all feels so contrived to me. I have a different relationship with time than a lot of people, but that actually makes me more productive. I get more done in a few hours than a lot of people do in a week. But still, I absolutely hate deadlines and standard-issue definitions of time.

Not having that holding me back has been wonderful.

But in other ways, it’s been pretty hard.

The combination of lack of routine, plus unusual activities produced a couple of meltdowns — one in a bookstore bathroom, the other at home. And a handful of commitments I said I’d do, haven’t “materialized”. I’m using that word to get myself off the proverbial hook, because the failing hasn’t been due to some amorphous outside influence — it’s been all me.

And my need to just withdraw and shut down for a week.

Oh, the holidays are funny things. Not ha-ha funny, but weird and absurd in ways that make me laugh, for some reason. I’d been so looking forward to having nearly 2 weeks to get some things done that I’d been putting off… but once I got into holiday mode, it was like I skipped over to a parallel universe, where precious few of my interests or activities intersected with my original plans.

pug looking sidewaysParallels by definition don’t intersect, so there I was, on my separate track, looking askance at my best-laid plans… feeling faintly guilty… but not too much.

More than anything, I just wanted to be what and where I was — a normally highly efficient individual… free at last.

Which is all very interesting to me, because few things give me more satisfaction than getting things done, creating, building, producing.

And yet, there’s that intense need to NOT do any of those things, every now and then.

It’s like there’s this dynamic back-and-forth between the DOING and not-doing, that balances out my life. And considering how much I’ve been doing for months, now, I really needed that time of not-doing, to reset.

Which makes me really look forward to getting back to my regular routine.

Yeah, as much as I enjoy floating in some amorphous cloud of whatever-ness (and I do!), there’s still a big part of me that just loves-loves-loves my productivity. My predictability. My ability to Get Things Done. I love surrounding myself with the results of my work, and I love the process of getting to those results. I love having my set sequence of steps I follow to a “t”, with so much expertise, I don’t even really need to think about the steps. I just do them. Because I do them every single day, and they’re very much a part of me. Some days, it feels like they are me.

So, in a way, getting back to my routine will be getting back to myself.

And that will be good — every bit as good as taking time away.

It’s all a balance, in the end, a continuously alternating back-and-forth between two extremes. I’m autistic. I know all about extremes. And I also know how to make the most of them.

And for today, and the next day, and the next day, I shall.


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The Upsides of #Alexithymia

tree by lake with moon and stars overhead

Something occurred to me, the other day. Namely, that alexithymia has been a huge advantage for me.

Not because it’s confused me about my feelings, but because it’s forced me — literally forced me — to rely on logic to navigate through life.

Okay, so that might not sound like such a great thing, considering how illogical the rest of the world is about stuff. Not being “in touch with my feelings” — heck, not even realizing I’m having certain feelings — sets me apart and puts me in the minority. It makes it harder to figure out whether people are really my friends or not. It makes it harder to figure out if I want people to be my friends. And it makes it difficult to tell what other people think of me, as well as figure out what I actually think of myself.

But that difficulty has been so pronounced, it’s required me to use my powers of observation and deduction to make sense of situations. To notice small details that others don’t see, to parse bits of info that most people overlook. To really invest a lot of myself in figuring out how things (and people) work, so I can be effective in interacting with them. I’m definitely one of the best “people persons” I know — people complement me all the time on my empathy and ability to interact with others. That, my friends, is because people have been one of my all-consuming interests, and I study them and their behaviors more closely than the most devoted American fantasy football player studies the weekly stats.

I’m good. I’m really that good. But it didn’t happen overnight. And it sure as heck didn’t happen by accident. I’ve worked at it. Nobody can take that from me. I’m the hardest-working person a lot of my friends. Well, yeah. Because I have to. Not much choice there.

I know it’s not a realistic option (because no choices are ever truly this binary), but if given the choice between built-in emotional “intelligence” about myself, or pure logic, I’d go with logic every time.

Given the right information about how my system works (including emotional things), with logic I can figure plenty of stuff out on my own. And logic serves me just as well as emotion. If I know — from observation — that such-and-such a sensation in my body means I’m nervous, I can take steps to offset the nervousness or channel the energy in a more productive direction. If I can deduce that such-and-such a feeling in my gut indicates a certain mental/emotional state, I can adapt and adjust and work with what’s there. If I know logically that being tired and hungry makes me feel terrible, emotionally, I can track my meals and sleeping pattern and recognize when my outbursts are related to exhaustion and/or low blood sugar.

Emotional self-knowledge only takes you so far, from what I can see. A whole lot of people around me who have no issues with alexithymia are (to put it coarsely) emotional wrecks. Their emotional states run their lives, and even though they’re “in touch with their feelings”, that doesn’t keep their feelings from taking over their lives. They’re even less happy than I am.

Of course, I’ve had to fail a lot of times before I figured out a lot of this. The rest of the world doesn’t instruct explicitly, but expects everybody to just know stuff. But all that failure has trained me to not take failing so damn’ personally, and to just get on with living my life, learning about it, and adjusting to the ongoing flow of information.

Information, it’s all information. And logic helps me parse through it deliberately, intentionally, self-sufficiently. Just how I like it 🙂

And I seriously doubt that I’d take the trouble to develop my logic, if I had insights into emotions and whatnot.

So, even with the difficulties, alexithymia has really come in handy. And to be honest, I wouldn’t trade it for the world. Some days, I’d like it to be a little less extreme. But I always have logic to fall back on.

And with that dangling participle, I’m off to live the rest of my life.


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Autscriptic: Mild Autism

Oh, this is good.

Autism and expectations

In 2016 I wrote a post that seemed to capture people’s imagination in a way that others didn’t. Autscriptic has since been shared far and wide.

It taught me that there is great power in sharing conversations between neurotypes: Laying bare the misunderstandings that tangle us up.

The first Autscriptic was about the trials of masking, this Autscriptic is about the times when I’ve had people quantify my autism based on how well I can smile. Once again it is not me recounting any one conversation, it’s a story based on many conversations I have had. Usually with people who know little about me and less about my autism diagnosis.

You must have a mild form

Mild?

Yes

Mild and soft and gentle as a summer rain?

I suppose

What does mild mean?

Well, you’re not very… flappy. You can talk, you can look at me. I just mean you…

View original post 1,205 more words

Two weeks off is about right. Looking forward to getting back.

road through snowy hills with small shack beside the roadSo, I’ve got another five days, till I go back to work. That gives me time to take care of more chores, organize myself, and finalize some stuff I’ve been needing to finalize.

It’s cold and snowy, which means I’m not going out much. I went for my first long walk, a few days ago, and the fronts of my thighs had lost feeling by the time I got back. My interoception (my internal sense of my body) isn’t always great, so there’s a certain risk with that.

So, I keep it simple and just avoid the situations that could be dangerous. Not always the best thing to do, but heck, I’m on vacation. Why suffer? And why put myself in danger? I know, I’m being dramatic. But at the same time, there’s always some element of risk, when I go out on the roads, especially in the winter. I have to share space with passing runners and cars and trucks, and the path is narrower, with less room on the shoulder — or no shoulder at all — because of all the snow.

It’s definitely less safe, than it is in the summertime, also because drivers are tired and distracted and might be having emotional issues leftover from the holidays.

But I’ll go out later, if I feel like it. I just don’t really feel like it today.

Yet.

Anyway, I’ve got five days off, pretty much. The days leading up to Christmas definitely weren’t vacation days. I had a lot to do, and that involved doing stuff with my partner, whose presence complicates everything for me, especially when we’re out in public. I love her dearly, I’m just very short on resources when I’m out in the Christmas throngs, which makes me a terrible partner.

I’m not being hard on myself. It’s an objective fact, which I try to mitigate, with greater or lesser success.

Well, so it goes. Lessons learned, each year. It’s all a process, and I’m feeling really positive about my intentions for next year. Of course, feeling good is fine, but doing better is really the goal. Happiness with myself (self-satisfaction, let’s call it) is fleeting. Especially when I see myself drifting from a path I set out for myself before, but failed to stick with it.

As 2017 draws to a close and the “new year” emerges from behind the horizon’s line, I think about all the ways I have come up short, this past year. I’m not being hard on myself. It would be worse, if I didn’t take myself to task for my failings. That would be the ultimate injustice to myself… to treat myself with kid gloves and tell myself that I can’t possibly do any better. I can always do better. Most of us can. We may have serious limitations, but those are rarely all-encompassing, and there are so many other ways we can compensate and make up for our limits in one area with strengths in another.

Autistic or not, we all have that in common. Autism just has a way of making everything seem / feel more extreme. And in many cases, it is.

So, I start my look to the future with a look behind, to find all the places where I can improve and make my coming year different from my last.

And that puts me in the mood to move forward. To make the most of these last five days, intentionally examining my life and seeing where I want my choices to take me, this coming year. I know I have issues I need to deal with — sensory issues, light, sound, touch, that are all made worse by fatigue exhaustion… balance issues, executive function issues… again, all made worse by being worn out. Just getting better sleep and giving myself more room to breathe on the weekends, really planning out my life and sticking with my routine… that can do wonders for me. It always does, when I stick with it.

I just get into a “brat” frame of mind, where I don’t wanna do what I have to do. Waaahh, waahhh… I can be such a whiner, sometimes. Self-pitying and downright lazy. That’s not me being unfair to myself; it’s calling it as I see it. And I have things I can do about it all.

Like feed myself. Feed my mind. Build myself up in important ways. I tend to push myself so hard, I don’t get enough recovery time. And that’s gotta change. Honestly, I need to do better about getting input, not just constantly cranking out stuff. It’s not difficult, actually. I know what feeds me, and it’s all about good quality ideas, images that lift me up and inspire me… actually reading the magazines I get for free from my frequent-flyer miles I earned years ago, at a past job. The magazines are totally free. And I love reading them. So, I need to do that more. Work that into my weekly routine. Just allow myself the time to work through them.

And less social media. It sucks up too much time, and it doesn’t always feed me. Sometimes it does, but it rapidly devolves. (That reminds me, I need to mute some people who have become exceptionally strident and combative, of late, without the self-criticism that I feel is requisite for taking up thought-battles.) My Facebook involvement is almost nill, and that’s been a huge benefit to me, since I backed off on it. Twitter often seems like a collection of ideological bore-holes, where everybody’s looking for water or oil or some other precious substance, but they’re tightly constrained in their own narrow sphere of influence. I do value Twitter for the links to research. But honestly, I can find that same stuff through a well-crafted Google search. I just have to look for it.

Most of all, this next year is about me taking responsibility for my own inner state. Autism becomes problematic for me, when it’s not properly managed. Of course, external situations play a role. Wouldn’t it be nice to work and live in a world that isn’t full of artificial scent and fluorescent lighting? But I’m one person with a relatively uncommon “constellation” of traits, and it’s simply not practical to expect the world to accommodate me. Anyway, that would actually take away from my adaptive resiliency. I need to adapt. I need to be resilient. I seriously cannot go through life expecting trigger warnings at every turn, so I can avoid unpleasant or taxing situations. If anything, the unpleasant and taxing situations make me stronger.

Do they cause suffering? Of course! Life is full of it, and if I actively avoid suffering, I actively avoid life. So, I’ll take the suffering, use it to learn, and move on. That’s always been my attitude, and it’s seen me through so many challenging situations that cause other people to curl up into the fetal position and/or basically disappear from their own lives.

Other people can do what they like, but I’d rather become toughened to the suffering and actively incorporate it into my life. I’ve never been one for weeping about the unfairness of life. That’s just the state of the world. Never, ever, will the world reach the levels of fairness that my sensibilities require. Do I lose my shit and attack the sources of unfairness, in an attempt to make everything more just and equal? What would be the point? The moment one unfairness disappears, another shows up. It’s just the nature of things, and it’s a much better use of my time to become inured to my own suffering, so I can do my part for others.

Now, I’m not talking about ignoring the systemic injustices that are cemented in place by ignorance and raw lust for power and control. I’m talking about the injustices that I perceive in my own life, which impact me personally. I just can’t let my hypersensitivity (which is a simple fact of my personal makeup) run the rest of my life.

Ah, I see my word count has exceeded 1,000 a few paragraphs back, so I’ll stop now. Gotta have some discipline and keep myself headed in a productive direction, instead of letting myself go on and on. People are busy. Time is precious. I’ve got work to do, so now I’ll go do it.

And prep for my return to the regular world with a renewed vigor and sense of purpose.